Tx Daddy's Girl
Distinguished member
- Joined
- Jun 2, 2013
- Messages
- 137
- Reason
- Loved one DX
- Country
- US
- State
- Tx
- City
- Beaumont
We've been to 3 doctors who are, thier words, "pretty sure" he has ALS. my dad is 62
Back in January dad could not get his BP under control, he averaged 178/125 and since he has had a mild stroke and mild heart attack in his late 30s, early 40s. Come February he began having some cramps and the twitching in his biceps began. His PCP did blood work in March and referred him to a neuro for an EMG. During this time my dad had a detached retina and had to have surgery and he already has macular degeneration and barely sees as it is. April 22 @ 8:30 was his appointment and I told him how to get there and that he might see me in the building (I'm a marketing rep and call on physicians). At 10:30 I went to that office for a service call and notice my mom still in the waiting area. I went to speak to the office who told me he was still in the room. At that time my dad came out and asked my mom and I to come in and listen to the dr. The Dr said it could be related to his neck surgery but he thought it was something else, I blurt out, "is it Parkinson's?" thinking that was as bad as it could get. He said, "no, I think this is different, do you want me to say it?" "Yes," we blurt out. "I think this is something called ALS or Lou Gherig's," he said. All the air left the room and my dad and I looked at each other and started crying because we knew what it was, my mother did not do he described the horror for her. The dr did not even do an EMG but referred us to Houston (dr. shaibani) and he sent dad home on mumscle relaxers. In the meantime he had an MRI and we scheduled an appointment with his neurosurgeon praying it was related to his neck surgery. The next week my husband and I took my daughter to Disneyworld - I'm probably the only person on earth who was unhappy at the happiest place on earth. I was constantly checking in on dad and had mom crying telling me he was doing wills, power of attorney and getting stuff in order. The next week we were back and I took dad to his appointment and within 5 minutes of looking at his MRI he told us that it wasn't his neck and his reflexes did look like ALS but we had to get to Houston. The next 4 weeks were filled with my dad calling and telling me things he wanted to do with my daughter before he died, how he begged me to get him some antidepressants and without his better judgement, buying my POS brother a house - pd cash, about 50k. At his appt with Dr Shaibani it was odd to say the least. I talk to Dr's on a daily basis and he is one of the coldest, most arrogant, I've ever met. Without a word he went about his assessment, having dad push and pull and saying "weak" "weak" - hewalked out and had my dad undress, came in and had a man recording my dad without explaining why, then excusing my mother and I to do the EMG. Upon returning my dad said he couldn't see well but some looked normal and some didn't but the dr never said. He came back in and told dad he wasn't sure it could be BFS or ALS but looked more ALS. He ordered blood work and some test which all I can assume was a genetic test, and to get off the muscle relaxers and come back in 3 weeks. My dad *****ed about the $500 for the special test. We went home with a little hope. The next few days my dad felt great, sounded great, not high on muscle relaxers. My dad exclaimed he was never taking them again. Then 2 days later, last Friday, he couldn't sleep because everything was twitching, my dad said "everything but my balls" - the next day he left his job. Today I called and checked on him asking how he was and he told me he slept some but he also told me that when he makes a fist with his right hand he can see on the right and left side of his forearm "indentions" where he has lost muscle. I'm crushed. I want to scream. I'm 34 - I shouldn't have to take care of my dad. He is still the strong man that is supposed to protect me.
I realize we don't have "the diagnosis" yet but once I heard him tell me about his muscle I think we both knew. My mom told me he asked his church to put him on the prayer list today he has had to stop serving communion and put in his notice at work last week. He is retired from the postal service but works a few days a week at a lumber yard because he can't sit still. He's told me he doesn't want to have to depend on anyone and "your momma can't take care of herself, your brother can't take care of himself and who is going to take care of Caden?" (my brothers son). He's right, at 38 my brother is not my concern - he will help my dad as far as fixing things but that's about it. My mother is 5'3 and about 300lbs - she won't be able to help my dad even though my dad is petite (5'10, 155). They live an hour away but are talking about moving back here into a townhouse.
I can handle my dad dying, it will kill me, but I'll accept it. What I can't accept is him suffering. I find myself praying that if he does have it that it is quick so that he doesn't suffer. He's already said no feeding tube or vent.
I'm sorry this is so long. I've looked at these forums for a month praying I would not have to join. Please pray for us.
Thank you,
Lori
Back in January dad could not get his BP under control, he averaged 178/125 and since he has had a mild stroke and mild heart attack in his late 30s, early 40s. Come February he began having some cramps and the twitching in his biceps began. His PCP did blood work in March and referred him to a neuro for an EMG. During this time my dad had a detached retina and had to have surgery and he already has macular degeneration and barely sees as it is. April 22 @ 8:30 was his appointment and I told him how to get there and that he might see me in the building (I'm a marketing rep and call on physicians). At 10:30 I went to that office for a service call and notice my mom still in the waiting area. I went to speak to the office who told me he was still in the room. At that time my dad came out and asked my mom and I to come in and listen to the dr. The Dr said it could be related to his neck surgery but he thought it was something else, I blurt out, "is it Parkinson's?" thinking that was as bad as it could get. He said, "no, I think this is different, do you want me to say it?" "Yes," we blurt out. "I think this is something called ALS or Lou Gherig's," he said. All the air left the room and my dad and I looked at each other and started crying because we knew what it was, my mother did not do he described the horror for her. The dr did not even do an EMG but referred us to Houston (dr. shaibani) and he sent dad home on mumscle relaxers. In the meantime he had an MRI and we scheduled an appointment with his neurosurgeon praying it was related to his neck surgery. The next week my husband and I took my daughter to Disneyworld - I'm probably the only person on earth who was unhappy at the happiest place on earth. I was constantly checking in on dad and had mom crying telling me he was doing wills, power of attorney and getting stuff in order. The next week we were back and I took dad to his appointment and within 5 minutes of looking at his MRI he told us that it wasn't his neck and his reflexes did look like ALS but we had to get to Houston. The next 4 weeks were filled with my dad calling and telling me things he wanted to do with my daughter before he died, how he begged me to get him some antidepressants and without his better judgement, buying my POS brother a house - pd cash, about 50k. At his appt with Dr Shaibani it was odd to say the least. I talk to Dr's on a daily basis and he is one of the coldest, most arrogant, I've ever met. Without a word he went about his assessment, having dad push and pull and saying "weak" "weak" - hewalked out and had my dad undress, came in and had a man recording my dad without explaining why, then excusing my mother and I to do the EMG. Upon returning my dad said he couldn't see well but some looked normal and some didn't but the dr never said. He came back in and told dad he wasn't sure it could be BFS or ALS but looked more ALS. He ordered blood work and some test which all I can assume was a genetic test, and to get off the muscle relaxers and come back in 3 weeks. My dad *****ed about the $500 for the special test. We went home with a little hope. The next few days my dad felt great, sounded great, not high on muscle relaxers. My dad exclaimed he was never taking them again. Then 2 days later, last Friday, he couldn't sleep because everything was twitching, my dad said "everything but my balls" - the next day he left his job. Today I called and checked on him asking how he was and he told me he slept some but he also told me that when he makes a fist with his right hand he can see on the right and left side of his forearm "indentions" where he has lost muscle. I'm crushed. I want to scream. I'm 34 - I shouldn't have to take care of my dad. He is still the strong man that is supposed to protect me.
I realize we don't have "the diagnosis" yet but once I heard him tell me about his muscle I think we both knew. My mom told me he asked his church to put him on the prayer list today he has had to stop serving communion and put in his notice at work last week. He is retired from the postal service but works a few days a week at a lumber yard because he can't sit still. He's told me he doesn't want to have to depend on anyone and "your momma can't take care of herself, your brother can't take care of himself and who is going to take care of Caden?" (my brothers son). He's right, at 38 my brother is not my concern - he will help my dad as far as fixing things but that's about it. My mother is 5'3 and about 300lbs - she won't be able to help my dad even though my dad is petite (5'10, 155). They live an hour away but are talking about moving back here into a townhouse.
I can handle my dad dying, it will kill me, but I'll accept it. What I can't accept is him suffering. I find myself praying that if he does have it that it is quick so that he doesn't suffer. He's already said no feeding tube or vent.
I'm sorry this is so long. I've looked at these forums for a month praying I would not have to join. Please pray for us.
Thank you,
Lori